Hey! Chronic Pain Patients- Fight Back!

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My little-ole story really isn’t much.  There’s lots of pain patients just like me!

What matters is that my quality of life has improved thanks to a combo of meds & procedures. and I’m not alone! Our meds are working!  None of us expects to be pain-free. But managing is power!

Since I was recently asked my personal story- I’ll do my best not to bore you’all and share it here too.

I’m a lupus patient with multiple nerve entrapments from inflammed blood vessels and nerves-which leads to recurring uveitis, scleritis (painful eye issues), trigeminal neuralgia (cranial neuropathy), multiple peripheral neuropathies (ulnar, radial, medial & pereanol) that flare up..also degenerative discs, narrowed cervical spine issues, a slipped vertebrae at S1 L2 that causes sacroillitis, severe plantar fasciitis, extreme photosensitivity from lupus (UV causes hives and rashes-the sun is not my friend) osteoarthritis, tons of mouth sores & nose sores from lupus, and I’m sure I’m forgetting a few.

Oh yeah, brain fog too from cns issues from lupus, but nothing major. Like my father used to tell me, “Well how is everything ELSE?” LOL- “Fine” I’d say! Actually I’d have to say my achilles heel is actually my heel- I’ve had 3 nerve surgeries and a toe amputation to try and stop the horrid pain in my right foot- feels like someone is lighting a match under my toe (not a neuroma-but a pereanal nerve entrapment-who knew! lol) and like someone is cracking me on top of the foot with a ruler. Relentlessly. Sometimes for days. Only relief is strong pain medication and hot water beating down on it.

That all said (and it was a whopper, I know) you get the gist of it. I am not afraid to tell anyone that I take 23 meds a day (mostly for lupus) but that it includes the max of tramadol (2 50mg every 4 hours-8 daily) and that it pretty much works in the background-(I don’t even know it’s there!) and I take opiates 4 times a day for short term pain. I’d like to add that I have taken this same medication, same dosages for almost TWENTY years without an increase or a need for one & that I worked a full time job THANKS TO THE MEDS for most of those years.

I’ve worked with many doctors, and felt the sting of the stigma that comes with being a chronic pain patient. Unruly, judgemental pharmacists & techs who have stamped VOID on my prescriptions to pain docs that welcomed me to their office by saying, “if you’re here to get something to feel good you might as well walk out that office door right now”.

I’ve signed pain contracts, unsigned pain contracts, had surgeries and procedures and I completely understand if you are going through a hard time finding a pain management doctor who truly understands you!  You gotta kiss a lot of doctor frogs before you find a prince!  Don’t be afraid to find one that you have the right fit with!

My honest opinion- pain doctors are like night and day. Some are sympathetic, some empathetic, some not so much and some down right mean spirited and can treat you like a criminal or addict looking for a fix.

Lucky for me though I’ve had an anesthesiologist pain doc who gives me epidurals, radio-frequency ablations, cortisone shots and has prescribed me the pain meds that work for me for over TEN YEARS now!  He’s given me quality of life and I am grateful for his expertise.  He’s offered me procedures I didn’t even know existed!  Thanks to him I am mobile.  I had plantar fasciitis so severe I couldn’t walk without sleeping in an orthotic PF boot all night just to get a few hours to be able to be on my feet., and low and behold my favorite doc who was treating me for cervical spine issues said, “Hey, I can FIX THAT!”  WHAT?  And he DID!  Regular cortisone shots right into the connective tissue on the bottom of my feet was a miracle cure!  NO kidding!  Goes to show that you never know what one doctor knows that another one doesn’t!

A good doctor can make all the difference. I can’t say that enough to people who ask me. If you aren’t getting results with your physician, talk to him or her and if that doesn’t work- FIRE THEM and find another.

Chronic pain patients who are able to function thanks to medications aren’t who the DEA and FDA should be worried about. (why make the honest ones suffer?).. go out and catch the drug dealers of the illegal drugs and make sure teens are informed about the danger of taking drugs. Leave the chronic pain patients alone, especially the ones who are functioning thanks to the medications that give them quality in their lives. Most studies I’ve read say that true chronic pain patients do not become addicted.

Kudos to all you do to get our voices heard!

If you want to help out-here’s a petition shared with me from JGF Advocacy Project: CHRONIC PAIN PETITION-SIGN HERE!

And here’s a link to JGF Advocacy Group on fb:  Pain Is Not Addiction FB Site!

Sincerely, JJ

WHAT’S YOUR STORY?  Plz share in comments!

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A Country of Drug Seekers (???)

Posted on May 23, 2017 

By Steve Ariens, PharmD., (LINK TO ORIGINAL ARTICLE HERE!)pain is inevitable

(Editor’s Note—For the past several years, retired pharmacist Steve Ariens has shared his thoughts about chronic pain from the perspective of both a pharmacist and a husband whose wife suffers from chronic pain. I received an email from him this past weekend which started an interesting discussion about whether chronic pain patients are “giving up”. Both of us sense a frustration. I asked for permission to republish this column he originally posted on his own site, pharmaciststeve.com. Please read it and then share your opinion on the “state of chronic pain” these days.)

There are about 4.5 BILLION prescriptions filled in the USA every year – in community pharmacies and via mail order pharmacies. –  We have some 320 million residents—doing the math that means that each person would have 14 prescriptions filled each year.

Most of the prescriptions are filled by people who are “seeking  to improve their quality of life”.

This time of year a lot of those “drug seekers” are known as ALLERGY SUFFERs–they seek out antihistamines, cortisone nasal sprays and other substances used to control their allergy symptoms and improve their quality of life.

No matter what disease state or condition/syndrome a person is dealing with.. all too many will seek out some medication(s) to help to control the undesirable symptoms from the disease.. basically.. the person seeks out to improve his or her quality of life.

Some groups try to draw a line between themselves as being chronic pain patients and those who abuse opiates.

If you take a step backwards and try to look at those who take/use opiates and controlled substances.. and consider those that take them legally and those who take them illegally– because our society will not allow them to obtain them legally you ask” Are they all that different ?

Both are typically suffering from depression, anxiety and physical and mental “pain”. Both are trying to “improve” their quality of life… just what their own opinion/definition of “improve” may be can be quite different.

Those who are suffering from the mental health issues of addictive personalities.. they have demons in their head and/or monkeys on their back. They are just “seeking” to improve their lives by attempting to silence those demons and monkeys. Their “high” is getting some solitude from those things causing them mental pain.

Those that suffer from chronic pain are also “seeking” their own particular “high”, but their high is to calm the pain that torments them and keeps them from participating in a “normal family life”.

IMO, there are those in the chronic pain community that want to point fingers at those who our society has labeled as “addicts” and continue to point out “that is not us/me”… it is “them”..

People with mental health issues have always been “looked down upon” ..  just told to “suck it up and get over it”… our health insurance system has normally had poor coverage for seeing mental health professionals.

Is this part of the puritanical thread in our societal fabric that is still part of the “witch hunts” from the late 17th century in our country ?

Are those in the chronic pain community doing themselves any favors by agreeing with the DEA that those with mental health addictive issues are “bad people” and CRIMINALS?

Recently our previous Surgeon General declared that addiction is a mental health issue and not a moral failing http://www.huffingtonpost.com/entry/vivek-murthy-report-on-drugs-and-alcohol_us_582dce19e4b099512f812e9c

Does it make any sense that two different major Federal agencies and members of the Presidential Cabinet (DOJ & Surgeon General) are on opposite sides of the same coin… in dealing with people that are suffering from chronic conditions that opiates and controlled substance can help people deal with their health issues?

(Thoughts on this? And the state of chronic pain these days?—Please share in National Pain Report’s commentary section HERE: (NatPainReportCOMMENTS)

 

My Reply:

Hi Pharmacist Steve!

I’ve often wondered about the term “Self Medicating”. It’s encouraged if you have an allergy and let’s say, use benedryl and calomine. It’s fine if you take an aspirin or tylenol for a headache. It’s just dandy if you take an antihistamine for hay fever or alka seltzer for a stomach ache. Got constipation? Sure, take a laxative! No problem!
But live with chronic pain and want relief? Want to self medicate for that? OH NO, Now you’re labeled an addict!

Most of us chronic pain patients aren’t looking for a high. Like you said Steve, we’re just looking for quality of life, same as every “self-medicating” person is doing for their “acceptable” conditions. Studies say actual chronic pain patients don’t become mentally addicted…And so you gotta ask yourself..does a person with a bad cough get mentally addicted to their cough medicine they have to take to calm the cough?

In all honesty, I’m tired of the stigma attached to opiates and really tired of one set of people (who usually have never experienced chronic pain & have no medical training whatsoever) deciding for the rest of us what is good for us. We are individuals, should be reviewed individually and we should be allowed to live our lives the best way we can!

Sincerely, JJ (Lupus, TN+)

How To Find a New NORMAL & Change Your Game!

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What you once took for granted (walking, working, taking care of family & yourself) can suddenly become difficult when faced with any chronic disease & chronic pain.  What you once did effortlessly can start to look like a mountain to climb when managing illness-so what do you do?

Well, first you examine your status honestly.  You assess your abilities. Here’s some of those questions you may be asking yourself-and some suggestions to help you find a NEW GAME to make them happen!  After all, life isn’t going to stand still-the kids still need to eat, the house still needs cleaning & stocking, and very likely-this means you MUST adapt.

FINANCIALLY SPEAKING!

Can you work, but not reliably?  You may not be able to punch a clock any longer-but you’ve got some energy and love for keeping some part of your career in your life? You HAVE OPTIONS but you must make them happen!  They aren’t going to come to you-you must prepare!

You may want to apply for social security disability.  You are entitled to the money you put into the system if you can no longer work or earn what you used to because of chronic illness.  You can apply even if you still work as long as you do not make over $1020 monthly. It’s time-consuming but do-able.  You can apply online at http://www.ssa.gov.  You don’t need a lawyer to apply-and most lawyers actually want to wait until you get your first denial to take your case-so applying is the first step.  Remember-this isn’t an easy or immediate solution.  This is thinking ahead for your future-it may take up to 3 years to get approved (no guarantees either) but stay vigilant. It’s usually a matter of WHEN, not IF that you will be awarded SSDI. So hang in there-and get started!

Now that your thinking long term-you can think short term.  What about NOW, what about the sick days, the doctor appointments, the unreliability factor in your work or job performance & attendance.  Well-I suggest take it head on.  Ask for part time and keep records of your physical health and lack of work ability.  This will be important to your SSDI case if you have applied.  

Asking for less hours is a necessary tool to keep your stress levels down and your disease symptoms minimized.  It’s a MUST.  You may end up surprised that working less hours brings you better health management.  If you can take your work home, ASK!  You never know unless you bring it to your boss’s attention-if you are working in an occupation that you can be productive from home-making your own hours can take away that issue of not being able to do a 9 to 5!  It’s always worth a try!  If possible, you may want to consider working as an independent contractor-this way you can continue your work at your own pace-and from home, where it can be much easier to manage your health, it keeps you in the career you love, and continues to bring in an income!  If there was ever a time or reason to give being independent a shot, THIS IS IT! If the company you work for or your occupation doesn’t offer a “work from home” alternative-maybe spend this time looking for one.

For immediate financial needs if you reduce your hours or find yourself out of work due to health issues is to apply for state help.  Food stamps are usually available on an emergency basis, you can apply online in most states and many cities have community services that might be able to help pay rent and utilities.  Churches and synogogues can be very helpful assets as well.  You may be able to find roomates to share expenses, caregiving opportunities or bartering options!

Once you’ve got your long term and short term financials down-it’s time to manage your home, your family and your disease.  Once again, you’ve got to change your game!

MANAGING YOUR HEALTH!

Get your doctors and specialists in order.  Make a folder for all your medical records (labs, doctors notes, etc) and keep it updated. This is two-fold. One-it will be necessary for your disability case later on, and Two-you can better coordinate your healthcare this way.  Bring your newest labs, tests, dx’s & list of meds to all your appointments.  This shows your docs you mean business and your taking your care seriously.

Ask questions!  If you need better pain control, it’s time to get that referral to a pain management specialist.  They can offer ways to manage pain that go beyond simply taking medications. There are procedures, cortisone shots, nerve blocks, and surgeries that can make your quality of life BETTER!  Now’s the time to take care of YOU!

Get all your specialist appointments caught up, see your general practitioner and get all the referrals you need to your specialists!  Now is the time.  Again, this will help you manage your chronic disease & give you the paperwork and info you need for your disability case.  Remember ASK QUESTIONS at your appointments!  If you are undertreated, or suffering, SAY SO, and ask.  It might be time to change your medications!  If your not feeling that your doctor is “on your team”-FIRE HIM/HER!  Docs are like night & day.  A good fit is very important. It can mean the difference in your attitude, your pain level, the very basis of how you feel about your disease can change with better quality control of your healthcare. Make those good choices NOW!

And lastly- HOW TO BRING IT HOME!

Time to manage your household.  The players have changed so your game must change too!  You must try to take control of the house by managing your time and abilities!  DELEGATE CHORES!  It’s all about the organization of the household and family working as a TEAM!

Cook meals in advance if you can and freeze them for another day.  Take your time preparing meals, doing the prepwork in stages.  (Cut up the veggies, then go sit down.  Go back & do some more, etc)  Get family to help out with the everyday homecare things like washing clothes, putting them away, walking the dog, doing the dishes, straightening the house!  You can no longer do it all.  You can even arrange a meeting with family and your doctor to discuss what he/her thinks of your abilities-having a knowledgeable professional to relate your needs to your family can go a LONG WAY!  This could be your doctor, your parents, anyone other than you!

It’s all about QUALITY OF LIFE and FINDING that QUALITY!   You may still be able to do the things you love, keep the career you’ve worked so hard for and wanted but in a different way!  You won’t know until you try, and you really have no choice if your taking care of a family!  Make it easier on YOURSELF!  You deserve it!

JJ

Aunt Agatha’s Traveling Pains- The NERVE of those NERVES! Part 1

Here’s my story.  Maybe you will find something of use in it.  I hope so.  My point is there IS SOMETHING you can do to suffer LESS.  And that’s what it’s all about.  Quality of Life.

I’m going to talk about my mononeuritis multiplex, carpal, tarpal, ulnar, peroneal and radial neuropathy.  I’m going to mention & comment on my multiple cranial neuropathies, trigeminal neuralgia, bells palsy, occipital neuralgia, geniculate neuralgia and temporal arteritis.  I’ll be mentioning radiculopathies from trapped nerves.

I’m an experienced nerve damage sufferer.  I have systemic lupus with inflammation in blood vessels and nerves that cause entrapments.  I have osteoarthritis (doesn’t everyone lol) and have had radiculopathies that doubled me over. I have diabetes (controlled) and USED TO HAVE diabetic neuropathy.  That for the most part is GONE (or has morphed into nerve entrapments)  And most recently I was dx’d with reactive arthritis that causes nerve related symptoms like recurring sacroillitis and sciatica.

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Ok-I’ve posted blogs about nerves before.  Nerves are the bane of my existence.  Nerve & Muscle entrapments ache.  Extremity nerve damage is burning, freezing and vibrating.  Radiculopathies double you over. But Zappers?  They relentlessly smack you over & over like a yardstick being pulled back.  Zappers also come in the form of paper-cut type pain.  Like an knife slicing into your most delicate areas…between the toes.  It grates on you.  It keeps you up at night.  It tires you out.  It is mean spirited nasty nerve pain and in my case it comes in flares and sometimes it lasts for days.

I’ve dealt with nerve pain for 23 years. They started at age 32 after gestational diabetes-back then (I’m 53 I think, lol) it was extremity pain.  Feet mostly.  Felt for years like I had a motor running in my feet, like a phone vibrating..and that motor would and could rev up at will causing burning and freezing pain.  And zappers.  Don’t forget the zappers. Like lightning down the lower leg to the foot…. but that said, those zappers were much milder to the ones I have now.  Ah…those were the days.  lol.  With excellent diabetic control I was able to “grow out” of diabetic neuropathy.  I haven’t experienced it almost at all in the last ten years.  So ya hear that all you with diabetic neuropathy?  There’s tons of hope!  There’s great reasons to control your blood sugar!  It makes a huge difference!  Back then docs put on me on all the go-to meds.  I tried neurontin, dilantin, lyrica, elavil, cymbalta, tegretol, tramadol, lidocaine patches and narcotic pain medication.  So I KNOW nerve meds.  My humble opinion is that it’s safe and easier for docs to prescribe non narcotics, they WILL.  If it isn’t working for you, get another doctor, try another combo, seek a pain mgmt specialist who can offer you procedures and medication.  There’s help.  RUN FOR IT!  Procedures for diabetic neuropathy?  I’ve had a chiropractor, acupuncture, tens machines, lidocaine patches (wrapped in em, lol) and was even offered a hyperbolic chamber.  Diabetic neuropathy is stubborn.  I used to sit on the edge of the bathtub and stick my feet under burning hot water.  It felt better than the nerve pain.

NERVE ENTRAPMENTS

But for nerve entrapments-I’ve had success with cortisone shots, epidurals, and radiofrequency ablations.  I also have connective tissue issues-plantar fasciitis-and a very smart pain doc saved my life and gave me back my mobility with two little cortisone shots right into the tissue on the bottom of my feet.  It was a miracle to me!  Not all docs, especially GP’s are aware of this- so get yourself a doc who is.  Shop around!  I’ve been able to put off some nerve entrapment release surgeries by cortisone shots too.  So don’t give up.  There’s real HELP for you if your suffering from carpal, tarpal, ulnar, etc.

RADICULOPATHIES

For radiculopathies- in my case they were in my shoulder/neck and caused by osteoarthritis, damaged herniated discs pressing against nerves and closing up the space for the nerves.  Eventually I had an anterior bilateral dissectomy and fusion using adult stem cells for disc material.  I’ve been extremely happy with the results!  Before that though the pain was excruciating.  I used to lay my neck on a burning hot heating pad..because THAT pain was better than the radiculopathy pain.  So I’m aware of how bad a pinched nerve can be!  I did have a great neuro who took one look at me cowered over in searing pain, ran out of the room then came back in with a cortisone shot-and right then and there gave it to me- wow it helped.  Good for him.  What a guy!  (no kidding)  I still get radio frequency ablations to kill the nerves in my cervical spine (before and after the surgery) and they last about 8 to 10 months!  So again, ASK your physicians to refer you to a pain management specialist who does procedures or to an orthopedic specialist, or neurologist for the help you need.  You don’t have to suffer!  (as much, anyway)

UNUSUAL ZAPPERS I HAVE NOW

And all that leads me to now- Diagnosed with systemic lupus 2010.  Multiple nerve entrapments-carpal, tarpal, cranial nerve issues, etc.  But the “Bane of My Existence”- (besides the TN ‘Trigeminal Neuralgia’-which is horrifying all by itself-there’s a reason they call it ‘The Suicide Disease’)..the worst pain now are a couple Zappers that elude the specialists- one smacking pain (like your hitting the top of my left foot with a belt) and another Zapping pain like your giving me a paper cut over and over on the side of my 3rd toe right foot.  (& there is a nerve condition called Morton’s Neuroma-& this is a common place for it to be- but in my case it is not Morton’s)…I manage entrapments mainly with regular cortisone shots-they are helpful & I’ve managed to avoid a bunch of surgeries, so that’s good.

So here’s the part in the story you stop and say…”OH ME TOO” and “(I KNOW EXACTLY WHICH NERVES ARE THE PROBLEM”.  If not, well ok.  Thanks anyway…you can keep reading if you want, ha.

Problem Area ONE: The slicing pain on the side of the 3rd toe.  The pain flared up about every 4 weeks and lasted for days.  I couldn’t sleep, concentrate or stand it!  My orthopedic surgeon did 2 nerve release surgeries on the foot (median nerve) he clipped both sides.  The pain remained.  (Grrrrr)  I was desperate.  We decided the best course of action was to take the stupid toe.  That oughta do it!  Wrong.  I had my 4th toe amputated all the way up.  It’s better now, I get the nerve flare ups there less often and they are less intense but they are STILL THERE!  What kind of a monster is this nerve anyway!!!!!!  Btw-I use lidocaine patches (do they help? Eh…not really) & cortisone shots- which do nothing but ANGER the nerve.  Last and only time I had one there it put me into misery for a week.

Problem Area TWO:  Top of Left Foot smacking pain that feels like someone’s got a ruler and they are relentlessly smacking me with it at exactly timed intervals.  Whoever is doing this, STOP IT!  IT HURTS!  I put lidocaine patches on it, exercise the leg and foot, put it in all sorts of crazy positions…run it under hot water…smack it myself, poke it, rub it, hold it down, apply pressure, you name it.  I’m convinced it’s got some type of force field around it though.  There’s no permeating it’s existence.

On the personal side- (as if I haven’t already told you more about my nerves than probably anyone ever has)…I’ve had doctors that have told me there’s nothing they can do.  I had one tell me she wished there was something she could do – while I was slumped over in severe pinched nerve pain.  And my point is: THERE WAS something she could do.  She could’ve sent me to a pain mgmt doc who does procedures, she could have suggested an orthopedic surgeon or a neurologist.  You’d think it was a no brainer- but she didn’t.  She sent me away in horrific pain with a couple of pain pills.  So do NOT ASSUME there is nothing you can do for your nerve pain.  THERE IS always something you can do to make it a little better.

More to come on cranial neuropathies.  This is gonna take awhile!  LOL

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The NERVE of LUPUS!

LUPUS Neuropathies, I’ve wondered what IS the cause?  Is it destruction to the myelin sheath?  Is it the same as in diabetic neuropathy?  Is it from inflammation in blood vessels or nerves or both?

ImageTry asking a doctor that question..lupies-ask your rheumatologists..they are not quick to “go there”, although statistics are that 20% of all patients with systemic lupus (SLE) have neuropathy and of those 20% , only 4% have cranial neuropathies.  I’d be hip to hearing YOUR stories and responses from your rheumatologists on the subject, so feel free to comment!

Those statistics IMO are right on the money!  I’ve met many patients with lupus online, and about a quarter of them have neuropathy and out of those in the 3 years I’ve been online hanging out in support groups, I have met just about one dozen of us with lupus and trigeminal neuralgia, geniculate neuralgia, temporal arteritis, etc.  I try to share information I find on medical sites at my other site here:  http://lupuscranialneuropathies.blogspot.com/ .

Here is a good explanation of the process from Lupus International:

A variety of pathological processes may be involved in CNS lupus. The blood supply to a particular part of the brain can be disrupted due to autoimmune vasculitis (blood vessel inflammation), or clots formed as a result of antiphospholipid antibodies, or emboli that travel from a cardiac source. In some lupus patients, the thickness of their blood is increased causing hyperviscosity and this may disrupt blood flow. Anti-neuronal antibodies also may be produced in some lupus patients; these can have direct effects on the cells of the brain (neurons) and alter their function. The choroid plexus, a part of the brain that is the source of cerebrospinal fluid (CSF- a fluid bathing brain and spinal cord) may be involved thus causing diffuse problems. Several cytokines such as interleukin-1, interleukin-6 and interferon-γ are increased in CNS lupus and these have a direct effect on the neurons and can interfere with their function. Abnormalities of the hormones produced in the hypothalamus, pituitary and adrenal glands (the HPA axis) are common in lupus due to the disease itself as well as the effects of steroids and these abnormalities can cause some of the CNS disturbances lupus.
In addition, a number of secondary factors lead to the manifestations of CNS lupus such as infection (lupus patients are more prone to certain types of infections), medications (several drugs such as corticosteroids have significant CNS toxicity), hypertension, electrolyte imbalances, uremia (renal failure), thyroid disease, atherosclerotic strokes, and subdural hematomas. The concomitant presence of fibromyalgia in lupus patients is associated with an increase in functional neurological problems such as anxiety and cognitive dysfunction.

I have both peripheral and cranial (brainstem) neuropathies with myoclonic seizures.  I take anti-seizure meds (tegretol) that help control them.  Trigeminal neuralgia is considered to be the most painful condition known to man.  There is no cure for nerve damage.

The LFA has some of the best information on lupus and neuropathy.  From http://www.lfa.org:

The Nervous System

Lupus is an autoimmune disease that can affect almost any part of your body, including your joints, skin, kidneys, heart, lungs, or blood. Lupus can also affect the nervous system and brain. There are several terms doctors use to describe this: neuropsychiatric lupus (NP-SLE), neurocognitive dysfunction, or central nervous system lupus (CNS lupus). Your nervous system has three parts, any of which may be affected by lupus.

  • The central nervous system (CNS) consists of the brain and the spinal cord.
  • The peripheral nervous system (PNS) is a network of nerves that connects the brain and spinal cord to the rest of the body, and gives skin and muscles the signals needed for sensation and movement.
  • The autonomic nervous system (ANS) allows communication between spinal and peripheral nerves and the brain and internal organs, and controls functions like breathing, blood flow, and heart rate.

People with lupus can experience a number of complications when their nervous system is affected. The symptoms may come on suddenly or may come and go, but they will vary depending upon the location and extent of the tissue injury. These symptoms also can be present in other diseases, so diagnosing lupus-related nervous system disorders is often difficult.

Neurologists are the physicians who specialize in the nervous system. They may rely on a number of diagnostic tools to determine whether lupus is involved in your cognitive problems:

  • x-rays
  • brain scans (magnetic resonance imaging (MRI) and computed tomography (CT)
  • electroencephalograms (to capture the electrical pattern of brain activity)
  • spinal tap (to examine fluid in the spinal column)

Behavioral and cognitive tests may also be done to find out if your memory or other mental abilities have been affected.

Depending on the symptoms, a variety of medications are available to treat lupus-related nervous system disorders, including non-steroidal anti-inflammatory drugs, antimalarials, and steroids. Your response to treatment may be rapid or gradual over several months. For many people with lupus, nervous system involvement is completely reversible.

ImageCentral Nervous System (CNS)

When lupus affects your central nervous system, many symptoms may occur, including:

  • headaches
  • confusion
  • fatigue
  • depression
  • seizures
  • strokes
  • vision problems
  • mood swings
  • difficulty concentrating

Drugs used to treat lupus can cause side effects that are similar to the symptoms of CNS lupus. If you have symptoms of CNS lupus you should consult a neurologist who can determine which symptoms are side effects of medication and which are due to lupus. The drugs most known for causing symptoms like those of CNS lupus are:

  • Non-steroidal anti-inflammatory drugs (NSAIDs) – may cause headache, dizziness, confusion, and in rare instances, meningitis-like symptoms
  • Antimalarials – in very high doses (not usually given for lupus) may cause manic behavior, seizures, psychosis
  • Corticosteroids – may cause agitation, confusion, mood swings, psychosis, depression
  • Anti-hypertensive medications – may cause depression or loss of sex drive

A serious form of lupus called CNS vasculitis may occur when there is inflammation of the blood vessels of the brain. Characterized by high fevers, seizures, psychosis, and meningitis-like stiffness of the neck, CNS vasculitis is the most dangerous form of lupus involving the nervous system and usually requires hospitalization and high doses of corticosteroids to suppress the inflammation.

Peripheral Nervous System (PNS)

The nerves of your peripheral nervous system control your motor responses and sensation, so symptoms of numbness or tingling, or inability to move a part of your body, may be the result of lupus affecting these nerves. Known as peripheral neuropathies, symptoms of PNS nerve damage are caused by inflammation of the nerves or by compression of the nerves due to swelling in the tissue around them. The types of symptoms you might experience include:

  • vision problems
  • facial pain
  • ringing in the ears
  • dizziness
  • drooping of an eyelid
  • carpel tunnel syndrome

Autonomic Nervous System (ANS)

The autonomic nervous system regulates many of your body’s functions that happen almost automatically: heart rate, blood pressure, feeling hot or cold, bladder and bowel functions, release of adrenalin, breathing, sweating, and muscle movement. Lupus can cause these nerve signals to be overactive, which can lead to a wide range of symptoms:

  • numbness
  • burning
  • tingling
  • mental confusion
  • headaches
  • gastrointestinal problems such as nausea, vomiting, constipation, or diarrhea

Raynaud’s phenomenon

Raynaud’s phenomenon is a condition of ANS involvement caused by inflammation of nerves or blood vessels. Blood vessels in your hands and feet go into spasm and restrict blood flow, usually as a reaction to cold temperatures, with the tips of the fingers or toes turning red, white, or blue. Raynaud’s can also cause pain, numbness, or tingling in fingers and/or toes. People who have Raynaud’s phenomenon are advised to avoid cold conditions when possible, and may have to wear gloves or mittens when in air-conditioned surroundings.

Livedo reticularis and palmar erythema are two other skin disorders that may affect you if you have autonomic nerve damage. Both of these conditions can cause a bluish, lacelike mottling under your skin, especially on your legs, giving your skin a “fishnet” look.

Cognitive Dysfunction

As many as half of all people with lupus describe feelings of confusion, fatigue, memory loss, and difficulty expressing their thoughts. This collection of symptoms is termed cognitive dysfunction, although many people call it “lupus fog.”

Cognitive dysfunction most often affects people with mild to moderately active lupus. The causes of these symptoms, and the reasons that the symptoms tend to come and go, are not known. Living with cognitive dysfunction can be very frustrating. However, you can learn to improve your concentration and lessen confusion and memory loss with a variety of coping skills, including puzzles, games, biofeedback, using a daily appointment calendar, and balancing daily activities to reduce stress.

Lupus Headache

Compared with the general population, people with lupus may be twice as likely to experience migraine-like lupus headaches, commonly known as lupus headaches. The features of lupus headaches are similar to migraines and may be seen more often in people who also have Raynaud’s phenomenon. However, headaches can also be caused by vasculitis, a symptom of active lupus due to inflammation of the blood vessels. If you are experiencing headaches that are not improved by an over-the-counter headache medication, be sure to tell your doctor.

Lupus Pals – All about LUPUS & Support

Short music video about LUPUS, understanding lupus, support for lupus and info about SLE.